Ride For Life

Batesville Daily Guard
By Jon Trobaugh, Guard Staff Writer
Features | Published on Tuesday August 8, 2006

One cold December afternoon in 2004, Scott and Tammy Brown’s daughter Lauren came home from school worried, confused and full of questions.

“Some of our friends had found out, and their daughter is one of Lauren’s good friends. So, the little girl was on the bus and told Lauren, ‘Your mom is dying.’” Tammy, 34, says, nervously shifting in her wheelchair and glancing at her husband. “It wasn’t something we were prepared to tell yet. They (Lauren and son Logan) know, but it just happened.”

Of course, Lauren, then 8, wanted answers that day and the Browns responded in turn – “Sissy, your mother has ALS and that is why she’s had trouble walking, it’s not anyone’s fault, everything is going to be all right.” But what Lauren didn’t ask (and what the Browns themselves had yet to realize) was how much the family would spend on Tammy’s medical care during the next two years. The cost of sick today, they would learn, is astronomical.

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Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects the motor neurons reaching from the brain to the spinal cord and to the body’s muscle systems. The ALS Association says about 5,600 people are diagnosed with the disease each year in the U.S. and as many as 30,000 Americans are living with ALS at any given time.

Early symptoms include muscle weakness or stiffness; patients may find themselves tripping on carpet or stairs and unable to lift objects they had previously with ease. As the illness progresses, muscles in the arms, legs and shoulders as well as those that control speaking, swallowing and breathing atrophy (waste away) and become paralyzed. In most cases, mental facilities aren’t affected, even in totally immobilized patients, according to the ALS Association.

After diagnosis, Tammy quickly lost the use of her extremities and her independence. Muscle tissue in her shoulders and legs has atrophied to the point where daily tasks are almost impossible, and the disease may be progressing more quickly than the family first thought.

“Right now I am able to stand with help, but I can’t take a step or lift my feet by myself. I have no grip; my hands have gotten to where even holding a glass or cup is hard,” Tammy says, pointing out indentions in her shoulders and back where the muscle has clearly atrophied.

“I gag on toothpaste of all things,” Tammy says with a laugh. “And I cough a little after I eat. My doctor said that may be an indication that it (ALS) is spreading to my mouth or throat.”

The life expectancy of an ALS patient averages two to five years after diagnosis. However, a few have survived for 20 years or more, and an even smaller number has seen the disease’s progression stop or reverse. While ALS’s biological and environmental risk factors are unclear, in the 1990s researchers isolated a mutated gene on the 21st chromosome that appears to be one cause of hereditary ALS. Genetic testing for the disorder is available. Data also suggest a link between the disease and military service. ALS has no cure; one drug, Rilutek, is proven to increase the quality and length of a patient’s life.

ALS is not contagious, but the number of cases has grown in the last 20 years. It is not clear, however, if the increase is related to an actual higher incidence or greater awareness and diagnosis among health care professionals.

While some patients live for decades after diagnosis, ALS is still considered a terminal illness. Unfortunately for the Browns, it is also a financially and emotionally expensive one to fight, and fight is exactly what the family has decided to do.

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What follows is a partial list of expenses for the Brown family (December 2004 to present).

2004 Ford Conversion Van = $54,000;

Wheelchair lift for van = $5,000;

Rilutek = $1,000 a month;

Bathroom remodeling = $10,000 (so far);

Access ramp for front door = $400;

Doctor visits = $200 per visit;

Vitamins and other medications = $100 a month;

Miscellaneous expenses = $1,500 to $2,500;

Total = $120,000.

It is important to note that many of the items the Browns use were donated from the Muscular Dystrophy Association and several other charitable groups. Some local businesses such as Terminix and Wal-Mart also helped the family by donating items and volunteering services. Since the family’s monthly income is more than $1,500, it is not eligible for most state aid.

In the near future, the family will need to make two large purchases. Tammy’s wheelchair, on loan from the MDA, will not accommodate her illness much longer. A new chair will cost $17,000, $5,000 of which her insurance (for the time being Tammy is employed by Wal-Mart) will cover with another $2,000 coming from the MDA. The family will need to pay at least $10,000 out of pocket.

The Browns would also like to install a ceiling track lift in their home, so Scott will not have to lift Tammy as much during the day. The machine will use a sling to carry Tammy from room to room and will cost $4,000.

“If anybody out there is like us, you spend so much money and you are broke and there is nothing left,” Tammy said. “Some of these organizations will help with a wheelchair and things, but when it comes to lifts or other equipment there’s nothing. It’s just one more thing we need but can’t afford.”

Sadly, the Browns’ story is typical. Rising health care costs, shifts in governmental funding and a lack of charitable assistance leaves many families battling ALS to their own devices.

Linda Gilbert, patient services coordinator for the ALSA of West Tennessee, says insurance companies, employers, governments and even physicians have a lot to learn about ALS.

“Insurance is not about comfort,” she told the Guard. “They (the companies) will only purchase equipment which they see as necessary. We all don’t realize what patients need to live a quality life.”

Equipment such as lifts and vehicles used to transport patients to doctor appointments are not usually covered by Medicare or private insurance.

Gilbert said patients in states without ALSA chapters (like Arkansas) face larger problems. Physician awareness and availability of treatment options differ from state to state. Many patients see several doctors before one makes the correct diagnosis.

“Mostly, we offer support. Not just financial support, but emotional as well,” Gilbert said about the role of ALSA chapters.

Current legislation, for which Tammy has lobbied, calls for, among other things, the establishment of a national register of ALS patients for research purposes and fewer restrictions on state medical aid.

Tammy has also been instrumental in the forthcoming establishment of an ALS chapter in Arkansas.

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Tammy and Scott worked hard to get the life they wanted — loving marriage, healthy children, nice home, fulfilling careers — but everything changed with Tammy’s diagnosis.

“You never think about stuff like this when you’re growing up or having kids. You think, ‘I’ve got the rest of my life to do whatever.’ Life’s too short; you figure that out when something happens,” Tammy told the Guard, explaining her and Scott’s focus has shifted and the disease has brought them closer.

“What people don’t realize is this isn’t an individual disease. It affects me, the kids, my family, her family, everyone. We all have it,” Scott added.

Born in Rockford, Ill., a young Tammy and family moved near Thida in 1983. She attended school first at Oil Trough and then, after consolidation, at Newark. Tammy began working at Wal-Mart while still in high school. A dedicated employee who was not afraid to tackle big projects, she advanced quickly in the company, managing several stores across the country.

“I loved it, just loved it,” Tammy said, adding she was the definition of “career woman.”

Tammy did love her work, at times, putting it ahead of everything, even her family.

“I became a district manager and I was on the road a lot, doing special projects here and there,” Tammy said. “One night, I got a call from my son asking if I could visit him like I did the Wal-Mart stores. That was hard.”

After that, Tammy decided to move back home and co-manage the Batesville Wal-Mart. She considered the move just a stepping stone to bigger things. Actually, her goal for this year was to become a regional manager for the company’s automotive or photo lab division. But the disease has changed that too.

“Our new bathroom is being built in space we had intended for my home office,” Tammy said.

As devastating as the disease is, the Browns are keeping their faith and trying to live as normal a life as possible. Still, thoughts of the future are difficult to hold.

“I put on a good front for a lot of people, but when you are actually looking down into it, it’s hard to deal with,” Tammy said. “I used to be the most independent person you’ll ever meet, but I am unable to walk, dress myself at times even. I am not independent. Sometimes you feel like a real burden.

“This disease is just awful. I am in the middle of my life here, I am not able to plan for my future. The doctors tell you, you don’t have a future, and that hurts so much. ... I am not at the point where I can’t tell my kids I love them or my husband how much he means to me, but that could change,” she added.